Ensuring patients' voices are heard at end of life

AHA NewsMar 8, 2013

Hospice is not a place. Palliative care is not an alternative to full-bore curative medical intervention. End-of-life care does not mean simply the discontinuation of all treatment.

Unfortunately, too many people – including too many health care providers – believe otherwise. Here’s the undistorted picture: Hospice is a service, a type of multidisciplinary care focused on keeping people physically and emotionally comfortable during the anticipated last six months of a terminal illness; it can be provided at home and, in many cases, it has been shown to extend life.

Palliative care is a specialty whose practitioners bring to bear expertise in the relief of severe pain and suffering; it can be appropriate for seriously ill patients at any age and in any setting, even when there is excellent prognosis for full recovery.

End-of-life care is a descriptive term for the ministrations a person receives, adult or child, in the last stages of an incurable condition.

Misconceptions about these key concepts drive institutional and clinical practice in wrong directions. They condemn patients to painful but futile medical ordeals as life dwindles. They force conscience- stricken families to agonize on the horns of insoluble dilemmas. And they add costs unnecessarily, in a system that is strained to its budgetary limits.

Fortunately, a lot of people are making impressive headway in rectifying the situation. One is Bernard Hammes, director of medical humanities at 325-bed Gundersen Lutheran Medical Center in La Crosse, WI. He helped develop a program called Respecting Choices that clarifies end-of-life issues long before patients, families and doctors confront them. The Respecting Choices advance care planning template is in widespread use by health systems throughout the United States and several foreign countries.

At Gundersen Lutheran, every dialysis patient is invited to sit down within three months of diagnosis with a nurse trained to lead an earnest conversation – preferably in the company of family, a pastor or the like – about treatment preferences as the disease unfolds. They are documented and entered into the medical record, along with a power of attorney for health care decision-making. The crucial question posed to the patient is, “At what point would you no longer want dialysis to continue?”

According to medical literature, Hammes says that “half of the time when dialysis was stopped, it was a decision of someone other than the patient.” But at Gundersen Lutheran, “within a couple of years that problem went away,” Hammes says. “The solution was to ask patients. Ask them when they’re still capable. We call it ‘preventive ethics.’” La Crosse leads the way. Changing health care dynamics spurred leaders of Gundersen Lutheran and Franciscan Health Care, also in La Crosse and now part of the Mayo Clinic Health System, to explore “ways to legally collaborate,” Hammes recalls. One suggestion was to work together to expand Gundersen Lutheran’s dialysis protocol to bring advance care planning to the broader community.

Hammes chaired the task force assembled for this purpose, and out of it emerged the Respecting Choices program, now licensed to more than 60 organizations. It’s built around a new role, advance care planning facilitator – a nurse, medical social worker, chaplain or other suitable professional trained to “have the conversation and document it” rather than relying on harried physicians to add another ticklish, time-consuming duty to their repertoire. The task...